Hello neuropathy my old friendI have come to be infused with you againBecause a tumor slowly creepingObstructed my colon while I was sleeping And the cells, that were planted in my body Still remainWithin the sound of a silence

Haha the stupid things I did during infusion...making up songs to fit my treatment.

Yeah I had 12 treatments with oxi and from the first treatment I had symptoms that progressively worsened.

Swallowing broken glass, numb fingers and feet, first bite syndrome, food completely changed taste, cold drinks food or air triggering it. Crying hurt so much because the fluid I cried hurt my eyes terribly. When I had to cry I was like, oh damn, get ready for the pain.

Not to be a downer but mine got worse and lasted longer each treatment.

But, you can do it. You are throwing the kitchen sink at this disease, and give it complete and total hell. It's a nasty chemical for a nasty disease.

5 months later some numbness remains, but I feel better.I am glad I did it, it makes me appreciate eating and drinking and crying and being "normal."

I dread a recurrence and going through it again, but I know I can do it. It sucks but you can do it.

I think of my fellow cc members undergoing treatment everyday. Hang in there.

Thank you for your kind words. Actually Neuropathy got worse this time round, but everything else seems way better than the first time.

I'm managing way better this time around as well. Waiting the next 3 to 4 days out, so that I can back playing with my baby daughter and setting up my aquarium. It's easier when you know it will get better and when nausea is under control.

That's what I do during infusions hours btw.. I'm planning a Dutch 120 lt planted aquarium

I loved your poem btw!Thanks for sharing...

Thanks for chiming in.

(PS, if you need to drive a car in Europe, is way more probable that you die in a car accident than die of cancer...although I know it's impossible not to worry about recurrence... it's just a thought.. )

Ana, my onc said that everyone has a different personal dose of xeloda - she said that they start at the highest dose and then decrease jt according to side effects, the right dose is just below side effects. I take 1000mg twice a day as maintenance for nearly 3 years.

For the oxi each dose is less important than the one before - here in NZ there has been a trial of whether 4 doses is as effective as the usual 6 doses. In theUS the norm is 12 doses but here the benefit of so many doses is considered not worth the damage.

I have been taking 40mg of amatryptaline 2 x daily for 5 years which has really helped with neuropathy from oxi.

I don't think it's realistic for me to make the 7 Cycles with full Oxi, when by the end of round two I wasn't even able to walk on my own.

That said, I'm going to try at least one more time without reducing the dosage and maybe a fourth time with reduced Oxi, according to the side effects.I take vit. B12 in the good days and I'm hoping that it helps with future neuropathy.

I didn't knew about that trial in NZ, is it over yet? But it boosts my confidence to know that maybe 4 Cycles would be as effective as 6 in my case. I'm not having trouble whatsoever with Xeloda, I'm part of the lucky ones who didn't feel any side effects until now, only mild nausea.

I've followed your journey here at the club and you are a big inspiration to me, regarding your approach to your lung metastases and the adapt protocol - if I am to be in your shoes in a couple of years, I'm sure that would be the right way to go for me as well, if ever possible.

Thank you for accompanying the ones of us still in the trenches and for being a light at the end of the tunnel. Hope is a damn powerfull weapon

[Ana & Alex] wrote:by the end of round two I wasn't even able to walk on my own . . . going to try at least one more time without reducing the dosage and maybe a fourth time with reduced Oxi

> by the end of round two I wasn't even able to walk on my ownFor how many days after the infusion? If permanent, you definitely need to talk to your oncologist now.

> try at least one more time without reducing the dosageDo not decide this on your own. Your onc may well recommend reduced dosage earlier. AFAIK, the protocols say to start off with the full dose and reduce when side effects become prominent. Moreover, the first few cycles are the most important (as concluded in the NZ trial). It's important to keep your team informed of serious side effects.

I may have been too determined and still have side effects (neuro in feet, 4 yrs after chemo), but my 8 cycles were 100% effective and I've no regrets.

Hi Ana,Good suggestions here from others. I believe there is a study here in the U.S. as well in reducing Oxi tx to 6. If my memory serves me right, my DH had about 9 rounds of FOLFOX which enabled him to have surgery for mCRC to the liver w/good enough margins. However the effects of OXI were cumulative resulting in continued & increasing neuropathy over time - delayed onset neuropathy as described in the link:

TXLiz wrote:Hello neuropathy my old friendI have come to be infused with you againBecause a tumor slowly creepingObstructed my colon while I was sleeping And the cells, that were planted in my body Still remainWithin the sound of a silence

Haha the stupid things I did during infusion...making up songs to fit my treatment.

...AND therein a kindred spirit is born ....

1. THAT is a very VERY good take-off on the S&G classic ......

2. great song to work with and you keep the cadence of the song with your verse = not always easySO.... I am impressed my friend ... ya' done MEGA GOOD

3. I have hacked and hashed a few classics in my time'cos music moves the soul

4. wait for it the shameless self promotion .... If you are of a common mind I will throw a few links backatcha' if you'd like,mine being mostly chemo derived lighthearted attempts to give yet another "voice" to all our nonsense hereBUTT just to add on to what you've already got me hooked on ....

in endless rooms I heard their wordssenseless rantings, doctors words'neath the halo of a surgeon's sightI found my body bathed in healing lightand the tumorwhich was growing in my bowelevilSO foul

was smittenwithin the sounds....of HEALING ....

you finish the rest my friendYOUR vibe YOUR song

I'm just glad to be here to be a part of your Journey

Love Peace and HarmonyCRguy

Caregiver x 3Stage IV A rectal cancer/lung met10 Year survivormy life is an ongoing NONrandomized UNcontrolled experiment with N=1 !Review of my Journey so far

1st session - I only experienced first bite syndrome and it only lasted 1 day. No other side effects - Thought I was doing great, but labs on second session showed very low WBC. 1st session I was using 25mg CBD in the morning and about 3-5 mg of THC:CBD in the evening. no nausea, good appetite. I lost 1 lb during this 2 week session

2nd session - I stopped using CBD and THC for fear of immunosuppressive qualities. Experienced First Bite and cold sensitivity first day and went on until about day 7 Experienced some numbness in fingers/hands about 3 days after Infusion - lasted several days Experienced some muscle control loss in left hand for about 10-15 minutes a couple times and couldn't feel my calf muscles one evening for about 15 minutes. Experienced a lot of nausea. Zofran helped with major edge of nausea, but it still remained from day 3 until about day 7 Experienced loss of appetite. I lost 9 lbs during this 2 week session. Experienced SEVERE bone pain after receiving 2 granix injections to increase WBC.

3rd session - Discussion with ONC concluded I should try the CBD:THC again, but also would receive reduced oxaliplatin to 90%. Experienced First Bite and cold sensitivity first day, but was more mild. Lasted until about day 5/6. Experienced some mild numbness in fingers. Started day 3/4 and lasted until about day 7/8. Experienced some mild muscle control loss again in the same hand, once about 10 minutes. Experienced zero nausea had good appetite. So far have had 1 Zarzio shot for WBC - will get 2nd on 5th. Experienced NO bone pain, just some mild sluggishness feeling of bones. So far have lost 1 lb since session 2

In conclusion, I'd have to say the CBD and THC are helping reduce almost all the side effects for me - not to mention help me get some really good sleep and with less stress on the body than pharm pain meds and ant nausea meds.

I'm interested to see how my next blood work results show.This third session is also the only session that I've not had some mild fever at several points.The second session being the worst as night after 2nd granix shot I had a fever of 100.2-100.9 for about 3 hours.Even after first treatment there were a couple days where temp would run 99-100.4

Thank you so much for your kind replies.Only now am I able to type anything resembling a sentence so that's why it took me so long to get back to you guys.

I really loved the poems by the way.. they reflect the kind of silent paradoxal despair that I'm feeling just about right.

Today is day 6 and I'm still feeling like crap. Nauseated and bloated, my bowel is on strike, and I'm feeling like I could die. Zero life quality. And my dauhgther is getting super anxious from seeing me like this. I was walking on my own on day 2, but I feel stitches and blades everywhere. Can't even drink drinks in room temperature.Appetite is good, but the nausea won't go away...

Life quality while on chemo? It's gotta be as joke right?

I have to see my oncologist about this crappy feeling from the Oxi, I know, and I DID - but she is super motivated to see me cancer free and wouldn't drop the dosis just now. I WISHED I could drop the Oxi and just stay with Xeloda... I really wished.

I'm always confronted with the question - if it does not work, how will I face myself and most of all, my daughter? "Mommy is dying because mommy just couldn't do hard-core chemo" seems a really bad goodbye message to leave behind.

Thank you for the Tipps regarding topical care of severe Neuropathy BS - I really hope I won't need them.

Benben that strategy with THC:CBD sounds like a winner! Unfortunately medical marijuana is not allowed where I live just yet... but I'm glad it works so good for you! Also thank you for your description of days post treatment and side effects, it makes me feel less alone and gives me courage to keep up with the storm...

Maybe today is the day, when it starts getting better again. Feeling like a whining baby and a balloon full of crap.

Ana, reading how you're feeling reminded me how well I feel now! I felt just like you and despaired that I would ever be "me" again. The oxi is horrible and has left my feet quite numb but hands are now ok.I have just had number 10 so almost there...end in sight at last!Once the Oxi was dropped, I noticed almost immediately how much better I felt and whilst still some side effects, they're far more tolerable.Once the half way mark comes, treatments seemed to go more quickly... hope it's the same for you...you can do it... you've already got some under your belt to prove it!!Sending love and hugs and hoping you'll soon be feeling better.Xxx

May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Yes Ana..no more oxi! The onc stopped it after 4 th round due to loss of reflexes in my ankles. I had also been having to wear thick gloves even in the house doing much was difficult with gloves!! Feet weren't really an issue then!I was happy to read that in N Z they are looking at just 4 as I had hoped to get 6 done. No reduction, just stopped!Without the oxi. I feel like "me" again!Someone suggested that maybe they give us the oxi just so we feel like the 5fu stuff is a doddle!?? It's got issues too but nothing like the oxi monster!!You'll do it . Use your good days to do things you love ...with the people you love... suddenly you'll see the end in sight!Love and hugs xxx

May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

[Ana & Alex] wrote:Benben just wanted to add that I looked closer at the THC:CBD and it is possible to get it in Austria! (Legally)

I'm going to speak to my oncologist about it!Thank YOU

Definitely talk to your Onc about it.

I had read about it being used in conjunction for chemo in reducing neuropathy side effects, increasing appetite, and reducing nausea. Also had multiple nurses suggest to me using it in conjunction with chemo for reduction of side effects.I can attest to the fact that it indeed does the above. You're on a slightly different chemo, but we both are receiving Oxali - which is the big ASS kicker.I see you had a delay of 2 days on treatment. I too had low WBC after first treatment. They still gave me chemo on time for session 2 even though i was at 1.05 ANC when minimum for my center is 1.0.Even after receiving granix shots x 2 on third treatment I was delayed 2 days as my ANC was only .420 - severe neutropenic levels. Make sure they keep up on the WBC count especially the ANC levels. You may also need toget some growth factors to elevate the counts. I can tell you the bone pain I felt this time was minimal - like a 2/3 pain scale vs the 10 pain scale from previous time. The only real changes were a spreading out of the shotsso they were 5 days apart instead of back to back, and the use of CBD prior to shot, followed by some THC:CBD after shot, and another THC:CBD prior to bed.

I'm in a state that marijuana is legal across the board. So I actually don't get medical stuff as a lot of the medical grade is high THC, which would trip me out too much. Also I've read, but not sure, that the medical gradeis synthetically produced. I'm getting some edibles that have specifically extracted CBD and THC from the plant - without any of the other chemicals found in the plant from a local green shop.If you do get some higher dose/ratio of THC vs CBD - I'd recommend getting just straight CBD too as CBD can bring you out of a THC high if you have too high dose.

Good luck with your treatments. It's a tough road for sure, especially with side effects and blood counts.Good news for me - The Zarzio shots I received boosted me outside neutropenic levels into the normal range with an ANC count of 2.2.So I don't have to worry about neutropenic level of cleansing and diet for about 5 days. Then I get another shot on day 8 or 9 of zarzio.They are going to dial it back to a single shot, as with 1 shot I experience no bone pain at all. My total WBC is like 11.5, which is higher than normal.My kidney function was good - testament of lots of water and no claritin or codeine usage. Red blood count was back to normal range.Only warning sign came back with slightly elevated liver enzyme. So I just finished Round 4 of Chemo infusion, back at home with my pump on.

Keep your chin up Ana, drink drink drink - 120+ ounces of water a day. Try to go for a walk when you feel up to it as well.A little walking can do wonders for energy levels and general overall emotional well being.

[Ana & Alex] wrote:by the end of round two I wasn't even able to walk on my own.

Ana, I have had problems with walking since a walking problem (buckling of the knees) curtailed my FOLFOX chemotherapy in September of 2015. I hope you don't develop a major neurological disorder like I did.

Feb. 2015 at age 39: Dx stage IIIb cecal cancer extending into appendix March 2015 at age 40: Began FOLFOX, discontinuing early after 10 cycles due to suicidal ideation and difficulty movingOct. 2016 at age 41: Dx stage IV with 3 metastases to lungs (one 3.7 cm x 2.2 cm) and 1 to liverKRAS-mutation positive